Posted with permission from Dr. Damian Milton, originally written as the Appendix for the Labour Party Autism / Neurodiversity Manifesto Steering Group, 2018
Content Warning: this article discusses depictions of torture and abuse.
“…right from the start, from the time someone came up with the word ‘autism’, the condition has been judged from the outside, by its appearances, and not from the inside according to how it is experienced.” (Williams, 1996: 14).
This report looks into the commonplace implementation of Applied Behaviour Analysis (ABA) and Positive Behavioural Support (PBS), criticisms of these approaches, and why they are not usually supported by neurodivergent communities, before concluding with some recommendations for future practices.
ABA can be defined as the application of techniques based upon the philosophy of radical behaviourism (pioneered by B.F. Skinner and others). ABA seeks to utilise these theories of learning in order to alter behaviour. Contemporary theory and practice, despite moving beyond the ‘methodological behaviourism’ that prioritised behaviour modification, to the use of ‘functional assessments’ of the ‘antecedents, behaviour, and consequences’ of behaviour within a context (or ABC method), still primarily focuses on reducing behaviour deemed ‘aberrant’ or ‘inappropriate’ and increasing behaviour deemed socially ‘valid’ and ‘acceptable’. By following the principles of radical behaviourism, thoughts and emotions are treated as behaviours operating in the same ways as observable actions (Research Autism, 2018). Such a philosophy is criticised by other schools of Psychology or Philosophy of Mind (Stanford Encyclopedia of Philosophy, 2015). Proponents of ABA suggest that it is a ‘natural science’ of behaviour, rather than a ‘social science’ dependent on hypothetical constructs.
“Behaviour Analysts are not distracted by the many different theories of the causes of autism.” (childautism.org.uk, 2018).
Critics would suggest that rather than being an objective natural science however, it rather uses a flawed set of conceptual concepts at the expense of excluded concepts that have developed through other disciplines and perspectives. Despite being a general theory and practice, it is often incorrectly assumed to be a specific intervention used with autistic people (by both some proponents and critics). The history of ABA is not without significant controversy outside of working with autistic people though. One of the pioneers of using ABA to make autistic people ‘indistinguishable from their peers’ was Ivar Lovaas who also utilised the method as a form of ‘conversion therapy’ for transgender children:
“Rekers and Lovaas conducted the treatment in response to the parents’ concerns not the child’s. Furthermore, they challenged all four of the reasons Rekers and Lovaas stated for going forward with the treatment, including the need to relieve the boy’s suffering, the idea that the “problems” would continue into adulthood, that an early intervention may be the only treatment that worked, and that “the parents were becoming alarmed.”” (Wilhite, 2015).
These remarks are eerily familiar with regard to the reasons given as to why ABA is often administered upon neurodivergent people. In the UK, a somewhat less extreme version of ABA has taken shape in the form of Positive Behaviour Support (PBS): “Another way to decide what to teach a child with autism is to understand typical child development. We should ask what key developmental skills the child has already developed, and what they need to learn next. The statutory curriculum in the countries of the UK also tells us what children should learn. Then there are pivotal behaviours that would help further development: teaching communication, social skills, daily living or academic skills that can support longer-term independence and choices.” (Hastings, 2013).
Despite contemporary behaviourist theorists such as Hastings (2013) who favour PBS claiming to use a non-normalising social model approach, it is clear from the above passage that a normative approach to child development and education is being utilised. Such a view can be contrasted with autistic and wider neurodivergent and disabled activist accounts regarding behavioural intervention. A recent multicentre, cluster randomised controlled trial conducted by Hassiotis et al. (2018) however found no ‘treatment effects’ in terms of reductions in ‘challenging behaviour’ between those being cared for by staff trained in PBS compared to those who were not, and that further research should: “…endeavour to identify other interventions that can reduce challenging behaviour.” (Hassiotis et al., 2018:1).
According to the UK Society of Behaviour Analysts, the use of ABA should be based on a number of values, including a focus on the ‘individual’ and on ‘skill acquisition’. “Behaviour analysts ensure that the goals, methods, and outcomes of any intervention are important, understandable, and acceptable to the person whose behaviour is being changed, as well as to those who care about the person (e.g., parents, carers, teachers).” (UK-SBA, 2018).
Given that ABA is practised upon young children and less verbally articulate autistic people, coupled with the lack of understanding often found in non-autistic people’s interpretations of autistic ways of being and actions (Milton, 2012, Chown, 2014, Heasman and Gillespie, 2017, Sasson and Morrison, 2017), these values cannot be ensured. The ethical decisions as to what behaviour is to be addressed and why is left to carers and professional advisors. It is also notable that the behaviour often deemed in need of change by professionals for ‘social validation’ are not as important, understandable and acceptable to the autistic person expected to perform and comply. Similar issues would also be pertinent with all neurodivergent identities. “Any decisions made about how behaviour will be assessed or changed are sensitive to the individual circumstances of the person and are aimed at improving quality of life.” (UK-SBA, 2018).
Yet, when quality of life is defined in normative terms and without the input of neurodivergent people, or even deliberately not addressing critique, it can only too quickly become ableist oppression. Behaviour analysts suggest that ‘skill acquisition’ should be seen as primary goal of intervention. This places the pressure on the neurodivergent person to conform to society, whilst not making the same effort in return (Milton, 2014, 2017) “…to address quality of life issues by improving skills that can remove barriers to learning and facilitate independence and best practice utilises methods based on ABA…” (Keenan et al. 2014: 167).
The narrative presented by some leading advocates of ABA see autism and other neurodevelopmental ‘conditions’ as barriers to learning, and ABA as a way of facilitating independence and improving skills, and that this will all lead to a better quality of life. This statement is however highly normative, and unsympathetic to a social model of disability. Criticisms of ABA are often misrepresented by ABA proponents as a caricature, without attempting to engage fully with those criticisms. This is particularly relevant when such practices are implemented on potentially vulnerable people. “One expects lobby groups to give vent to fixed and emotionally charged views, but one expects more from scientists. Tolerance of scrutiny, acceptance of criticism, and objectivity in experimental approach and the interpretation of outcomes are expected. A discipline that makes extravagant claims of its methods, overstates its scientific status and has difficulty agreeing on definition of its terms will struggle to achieve scientific credibility.” (Hughes, 2008).
For many neurodivergent activists, the normalisation agenda inherent in such approaches is not a caricature, but a felt experience of living in what is perceived to be an inherently ableist society. Who gets to define what is ‘appropriate’, ‘challenging’, ‘disordered’, and ‘socially important’, is always imbued with unequal power relations (Mason, 2005). A denial of the directly felt harm of those that have had such methods implemented on them is often met with increased anger and frustration from members of the neurodivergent communities, as well as some parents (for examples see: realsocialskills, 2018, Omum2, 2018, Dalmayne, 2018), yet despite this, activists have attempted to explain what their contentions are, even making distinctions between differing experiences of ABA (Unstrangemind, 2018). The impasse between these perspectives is not just over the ideological purpose that a method is set to, but also the processes of ABA-based practices.
Although Milton (2016) found that interventions akin to PBS were popular amongst parents, this was contrasted with the views of autistic people. Tensions between these views are likely to persist, but a greater understanding of the reasoning behind why differing stakeholders are attracted to differing ideologies and practices can help all to build a common language in which to debate the issues. Such a way forward is being held back by those with a dogmatic adherence to ABA however, and a focus purely on the reduction of so-called ‘challenging behaviours’.
“…the whole ABA movement appears increasingly more like a cult than a science: there is a charismatic leader, a doctrine, a failure to engage with criticisms, inquisition and denunciation of any who criticise (however mildly), misrepresentation of critics, and proselytising exercises to gain more converts and spread the word.” (Jordan, 2001, cited Fitzpatrick, 2009: 141).
A study by Remington et al. (2007, cited Fitzpatrick, 2009) compared those who had home-based ABA to those who did not, over a two-year period. Using measures of intelligence, language use, daily living skills, and a statistical measure of ‘best outcomes’, the majority made no significant advances. Magiati, Charman and Howlin (2007) found no significant differences in a range of outcome measures either, although large differences were found regarding outcomes within both control and experimental groups. Hogsbro (2011, cited in Milton, 2016) found that on average, ABA provision had a negative impact on a number of standardised measures. Yet, the parents of children on such programmes were found to hold the highest expectations for their children’s educational progression, and professionals and parents using this model subjectively rated improvements higher than all other groups. Similar findings were also found by Kupferstein (2018).
“I had virtually no socially-shared nor consciously, intentionally expressed, personhood beyond this performance of a non-autistic ‘normality’ with which I had neither comprehension, connection, nor identification. This disconnected constructed facade was accepted by the world around me when my true and connected self was not. Each spoonful of its acceptance was a shovel full of dirt on the coffin in which my real self was being buried alive…” (Williams, 1996: 243).
In this quote, the late Donna Williams (1996) suggests that by learning by rote how to act as a nonautistic person can produce a ‘masking’ effect and be detrimental to long-term well-being and mental health. Williams (1996) directly criticised the use of behavioural techniques such as ABA for only working on function and appearance, and for their lack of fit with autistic perceptions. For Williams, such techniques: “…may feel like a senseless ritual of abuse, regardless of its ‘good’ intentions.” (Williams, 1996: 51).
Kupferstein’s (2018) recent study regarding the potential links between ABA, post-traumatic stress disorder (PTSD) and autistic people found that respondents across all ages who were exposed to ABA were 86% more likely to meet the PTSD criteria than respondents who had not been exposed to ABA practices.
Major issues with the ABA theory and practice:
– What behaviours are reinforced and deemed as functional and of social importance and relevance is chosen by an outsider – ‘Reinforcements’ may be inappropriately given (e.g. the bombardment of emotionally laden praise, and hugging, and punishments being potentially internalised as rewards such as timeouts) – Rote learning can lead to training people to behave as if their problems do not exist, or lead to ‘autopilot’ responses – The claim that ABA will suit everybody as an applied method – it clearly does not – The focus on behaviour at the detriment of subjective understanding and cognition – Often focuses on compliance and founded on normative assumptions – Reduces opportunity for natural curiosity and exploration – Utilises ‘reinforcements’ that are often extrinsic rather than intrinsic motivations for activities – The lack of generalising of newly learnt ‘skills’ – Sometimes punishment is endorsed as a ‘last resort’ – The intensity of programs (often suggested that one works on ABA programs for forty hours a week).
Instead, it is recommended here that practices should:
– Take a holistic and person-centred approach which therefore takes into account neurodivergent sensibilities, sensory perceptual differences, subjective accounts, cognitive theory, and a social model of disability – Building understanding and communication between all involved – Enabling environments to be more accessible – Reducing direct confrontation – Ethical considerations must be built in to every step of the process of acquiring professional competencies – Use of dangerous restraint methods and forced seclusion should be seen as disciplinary offences – Rather than focusing on perceived weaknesses and absent skills, utilise strengths and interests – Neurodivergent perspectives must be built in to every step of the process of acquiring professional competencies – Building local expertise and communities of practice, drawing upon multi-disciplinary expertise, but places the neurodivergent person at the centre of considerations.
Although similar criticisms can be made of other normative interventions that are administered upon neurodivergent people, few have as poor a track record in terms of participation as ABA and PBS. Although individual practice by parents and indeed professionals may not seek normalisation in the use of ABA, the flaws in its theory and implementation mean that we should be looking beyond its scope. Therefore the endorsement of PBS by the Care Quality Commission, alongside the widespread use in schools and mental health services needs urgent review. As a way forward, it is suggested here that the person-centred and socially sensitive approaches being developed by groups such as Studio3 and AT-Autism are promising and that these need to be tested with high quality research.
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Original publication can be found on https://neurodiversitymanifesto.com/